Hey everyone,
I’ve been reading these forums since I was diagnosed a couple of months ago and have found them so reassuring to know I’m not alone so thought I’d see if there was anyone who had been through a double mastectomy and lymph node clearance? What was the recovery like? Did you need any further treatment? I can’t have radiotherapy because of previous cancers and genetics. Also looks like I’ll potentially need chemotherapy depending on what they find in the lymph nodes and definitely tamoxifen for 5-10 years. What have peoples’ experiences been being young and having chemo and/or on tamoxifen?
I’m currently 29 and have been through cancer twice before but this feels like a whole new ball game.
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Hi,
I had a single mastectomy and lymph node clearance at age 49, so not young like you, but I just wanted to say that I found it fine and recovery was not bad at all. I was in hospital overnight and discharged in the morning with a drain which was probably the most annoying part, but a district nurse came every day to check it and then took it out quite soon after. I only needed paracetamol as had very little pain. Do the exercises they give you as best you can to ensure you get your movement back after the lymph node clearance.
I also had chemo which was not fun but perfectly doable. There are monthly chemo threads on here, which really helped me to chat to people going through the same thing at the same time.
You really have been through it with having cancer before and now this; I just wanted to send you a virtual hug x
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Hi,
Thank you for sharing your experience, it’s reassuring to know the lymph node isn’t too bad. Can I ask if you’ve had any lasting effects from it?
I’ll have a look at the monthly threads too that sounds like a good idea. I hope you’re all okay now too and thanks again,
Freya x
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Hi may3
I wasn’t young (diagnosed at 62, 3 years ago) but thought I’d add a summary of my experience in case it helps build a picture.
I requested double mastectomy when two smallish but different cancers found, one in each breast (invasive lobular being the worst of the two). Strong family history.
Surgery went very well with neat scar (after my ‘dog ears’ were improved during my subsequent axillary clearance - again at my request because I wanted to know for certain through path lab tissue examination how far it had spread in the local area; only one node involved, the one spotted by surgeon and already removed during mastectomy, not a sentinel node). Drain in each side for about a week or two. I recovered from both surgeries (3 weeks apart) well enough to thoroughly enjoy a girls’ mini break just 3 weeks later. Committed to the daily recovery stretches for a few months, as well as daily scar-reducing lotions. Numbness around armpits and at the back of those would seem permanent now, as are peculiarly numb-but-also-sensitive areas across my chest.
I did develop lymphoedema in the ‘axillary clearance’ arm/hand about 6 weeks later, an unnecessary and frustrating outcome as it turned out, since no further nodes were unearthed … but I couldn’t have known that in advance. However, after 6 months or so, and many different try-outs of various reduction methods by some lovely therapists, NHS and private, culminating in buying my own (expensive) pneumatic arm massager, the only residual sign at this point is a slightly puffy hand and elbow - imperceptible to even those who knew of it.
I had 5 sessions of radiotherapy to left chest wall with nothing worse than a slight temporary discolouration (which I know is not an option for you). Oncotype DX test ascertained chemo was of no real benefit, and I delayed, then reluctantly tried, AIs (Anastrozole) for 10 months before deciding I didn’t want to live with the side effects of any drugs, returning to feeling in my sixties rather than my nineties !
Don’t know if this helps, but it can’t harm to gather anecdotes. Wishing you the very best of luck for the months ahead.
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Hi May,
I was diagnosed with DCIS last year at 35 and had a single mastectomy and reconstruction. The surgery and recovery was okay, but slow for me. I went back to work after 5 months. I have little pain now but it does come now and again near the lymph nodes. I found it difficult returning to work with such extreme fatigue. The Tamoxifen side effects (hot flashes, fatigue) peaked at 6 weeks, but Ive struggled with ongoing fatigue. It’s impacted me so much I am now asking my BC nurse if i can trail going on a lower dose, as it should have less side effects. I’ve not had the energy to exercise which has impacted my mood. And the worry of the cancer returning or developing secondary cancer is always there. This journey def has it’s ups and downs, but there are some women who react well and have limited side effects, but they don’t tend to share their journies as much.
I feel immensely lucky that I didnt need chemo or radiotherapy as I caught it so early. And I have times where i feel a little better and are more hopeful, but Im waiting for longer runs of feeling well, which seem minimal for now. I know I am potentially still early(ish) on in my journey and hoping things will settle and get better.
How are things going with you? You may see other posts from me about Tamoxifen where I’m more positive! I take mine at night, and that’s worked really well for me 
. Any questions - just ask.
M x
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Hey M,
Thanks for sharing your experience of it all and the recovery time. I’m sorry you’ve had a rough ride with the tamoxifen, but it’s nice to hear the hints and advice like taking at night and asking to lower the dosage if poss.
The double mastectomy with immediate DIEP and lymph node clearance is booked in for Oct 31st then will know about chemo/radio. I’ve already been off work a couple of months it’s taking up so much headspace I don’t know how I could’ve kept on teaching to be honest - I’m in awe of anyone who’s kept it up! Good to know it took six weeks for your side effects to peak too, I think work think I’ll be snapping back after surgery but I doubt it.
Sorry for questions - How regularly do you have follow up? Have they said anything about scans and things in the coming years?
Thanks again for taking the time to reply. I hope you’re slowly getting longer runs of feeling normal
Xx
Hey! No worries at all . I felt like i just went on a massive whinge there.
Imbot surprised youre taken time off to process beforehand, I really wish i had done. I continued working up until 6 days before my op. I had originally thought I’d be back to work after 6 weeks (LOL!) as that’s how long they said it took to physically heal. Take as much time off as you can to process, and dontgo back until you feel mentally ready. I had a good month of feeling “better” before I then felt ready to return. And i did a very slow phased return, and had to use some of my annual leave to lower my hours after the first month back.
You should get a yearly check-up. Because i still have one natural breast, i have mammogram appointment next month, which is when i was originally diagnosed last year. And I was invited to a “moving on session” last month but couldn’t go. I’ll also have a check up with my surgeon in Jan, as it will have been a year since the op. I’m not sure what the journey looks like if you will have chemo. We’re under there care for 10 years, which is reassuring. So if we have any issues with our breasts or want/need some cosmetic changes, they said they’d help with that.
It can feel like a really lonely journey, but you’re not on your own. I used these forums a lot laat year, and continue to check them regularly. You will get a lot of info/advice on here from other women xxx
No not at all, it’s a hard story to tell with complete rainbows and smiles and laughter when it’s just so far from that isn’t it.
6 weeks!! I’ve told mine it’ll be three months at least to recover. Feels silly being hopeful that I might not need chemo. Phased return is a good idea though and doesn’t sound unreasonable to ask for either.
Follow up sounds quite thorough then and ten years is a long time although I’m not sure it feels that way now.
Thanks for replying and stuff it does help to talk to people xx
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